Newly Diagnosed

[linda8]

My daughter was diagnosed with celiac disease 2 days ago. Her reason for going to the MD was coughing and phlegm after eating. She was placed on Nexium initially which gave her relief. She had an EGD and biopsy and it came back celiac disease, and we are waiting the results from the anitbody test. I have been doing a lot of reading and have not seen these symptoms mentioned. She has no GI problems. Has anyone heard of these symptoms being related to celiac disease? I believe she has celiac disease as I have a copy of the biopsy results setting in front of me, but it is just hard to comprehend right now.

I am looking for info on what to look for on lables of processed foods. Is there a list of what fast foods might be gluten free.

I have purchased rice flour, potato starch etc. to get started with the gluten free cooking.

Also have a question about the contamination issue. Is it really crucial that gluten free toast not be made in a toaster where wheat bread has been fixed, etc? Are there different degrees of this disease? So many questions.

Thanks to anyone that can help.

Linda

[Canadian Karen]

Hi Linda,

The separate toaster for gluten free bread is an ABSOLUTE MUST!!!!

I learned that the hard way..... Also, make sure you have separate pots and pans for gluten free food if the surface is porous - teflon holds in the gluten and transfers it to the gluten-free food being cooked in it.....

I have learned a very valuable lesson - I didn't take this disease seriously enough to go through all the trouble of doing all these things, and I paid the price for it...

I personally don't have the symptoms your daughter has, but I believe celiac3270 might be able to help you - some of the symptoms he displays are similar to your daughters....

I would like to welcome you to the board and there are truly a great bunch of people here and we are all here to support each other!!!

Have a great day!

Karen

[tarnalberry]

Take some time to look around the celiac.com information. They've got a good safe/unsafe list, including what you need to look for on labels. (The fun part is the "questionable" ingredients, which means you get to call the company. Joy.)

The contamination issue is definitely something to be very careful of. Remember, in her intestines, this is just another chemical reaction. One molecule of gluten binding to one immune system molecule. There are different "degrees" of celiac, in the sense that some people find their symptoms are worse than others, some people react more strongly than others, and some people have their intestines get damaged more quickly than others, but none of that means you can be more or less lenient with the diet. And toasters are probably the worst areas of contamination, 'cause you can never get them _totally_ clean.

Take some time to get to know the diet. It'll be a couple months before you're likely _comfortable_ with it, but don't beat yourself up over a few mistakes. We've all made them, and know that we may end up making one in the future too.

[celiac3270]

I personally don't have the symptoms your daughter has, but I believe celiac3270 might be able to help you - some of the symptoms he displays are similar to your daughters....

Sorry, I can't really help on the symptom part. I was exactly the opposite; I had lots of GI symptoms and I was the classic celiac and knowing what I know now, it should have been very easy for the doctor to diagnose me. My symptoms included abdominal pains (coming in 12-24 hour bouts about once a week, but sometimes more often), vomiting (accompanying the stomach pains), bloating (constant--I was REALLY distended), gas, audible stomach noises and rumblings, occasional loose stools, and low-weight.

Your question about different degrees of celiac: there aren't really any varying degrees. What varies are the symptoms that people get and how severely the react to gluten ON THE OUTSIDE. Just because you can eat something with gluten and not react doesn't mean that it's not hurting your body just as much as the person who is experiencing full-blown symptoms. Actually, some celiacs have no symptoms at all regardless of what they eat, yet if they don't stay on the diet, they're just as likely to run into complications later on.

I agree with Tiffany; definitely check out the resources of this site. Besides the message board, which is a wealth of information in itself, there is a portion of the site with articles and lists of all kinds of things related to celiac disease. On the left column towards the top of every page, there is a menu. If you click on "site map", you're taken to the sort of informational center of the site. From there, you can find articles on celiac disease, contamination, related disorders, lists of gluten-free products, lists of gluten-free ingredients, lists of gluten-containing ingredients, etc. When I first came here in February, I didn't utilize this tool, but still learned quickly since I read nearly every post on the boards. I did use some of the ingredient lists and now I realize the value of this tool.

Contamination is a HUGE issue. I am completely paranoid about this and it's difficult for some people to understand unless they're the ones getting sick for years on end and not knowing what was wrong. You should really have a few cooking things designated as gluten-free only: a pot, pan, spatula, toaster, etc. Sooner or later, you might fail to wash something carefully enough and then your daughter could be contaminated. One crumb will bring back any symptoms and frequent contamination will undo any progress you make. This leads into the toaster issue: if there is one crumb left in the toaster and it gets on a piece of gluten-free bread, the bread is contaminated. The risk is just too high.

When you have questions you can sometimes find the answers on celiac.com, but you can also run searches. If you scroll up a bit, you'll see the topic name, then you'll see your user name, etc. On the far right, there are a few options such as members, calendar, search, and help. If you're questioning, say, the status of Pepsi (it's gluten-free as is every other beverage made by the company), you could run a search for Pepsi and find a post in which someone asked if it was gluten-free. You get my point. It's just an easy way to save time..........

Your daughter's symptoms could very well be related to celiac disease because there are no set symptoms for celiac. I was a classic celiac, but we are now learning that the "classic celiac" is not necessarily the most common celiac. Symptoms for celiac disease are ranged, so any symptom could be a celiac disease symptom.

Please forgive my rambling......it's now about 4:30 in NYC, I've been up all night with an upset stomach.....celiac stuff.....my villi are healed, but my stomach is still irriated from all the gluten, even though I started the diet 8 months ago. The dr. compares it to a car--it's as if I was going at 100 mph with the gluten, so even when I slam on the brakes with the diet, it doesn't come completely to a halt, and it takes time for me to stop.......there i go w/ the rambling. I hope something I said was useful

-celiac3270

[linda8]

Thanks so much to all who replied. I didn't mention that my daughter is in college 5 hrs away from home. She came home to find out the results of her EGD. She's leaving today to return to college so we have been scrambling to find some answers to get her started off. I've bought her lots of gluten free products to take back with her. I wish I had her here longer since we have so much to learn.

I especially appreciate the contamination info. I believe what I'm reading but it just seems unbelievable that there is so much to watch out for.

Thanks again, and we'll keep reading.

Linda

[celiac3270]

Oh .....when I was replying, I thought your daughter was 8 or 9 .

I have nearly 5 years before I experience college with celiac disease. You should probably talk to the people in charge of food at your daughter's college. Jessica (angel_jd1) had a list under the teenagers only section about a very common food supplier that is very helpful and accomodating with college celiacs. Definitely send a lot of gluten-free food and try to print lists about mainstream products such as Lays chips, etc. that could be bought anywhere without great expense. Definitely send a small refridgerator and if the college will allow it, a toaster oven........all you need to get through life is a George Foreman grill and a toaster oven . Even if there is some rule against toasters, celiac is technically a disability so they should be able to bend the rules for someone like her. There are a lot of celiacs here in college now or just leaving college, so somebody should be able to provide some true insight into the issue.